In Brain News, Campaign News, Charity News

The challenge

Glioblastoma (GBM) is one of the most deadly types of primary brain tumour – people diagnosed with this malignancy have an average life expectancy post- diagnosis of only 12-18 months (The Brain Tumour Charity, 2020). Approximately one-third of all primary brain tumours diagnosed in England are glioblastomas (Cancer Research UK, 2023). The Less Survivable Cancers Taskforce report ranked the UK as 25th out of 33 countries for 5-year survival from a brain tumour (Bawden, 2024). With no new approved therapies for glioblastoma since the introduction of temozolomide nearly 20 years ago, access to innovative treatments must be a priority for NHS England and National Institute for Health and Care Excellence (NICE).

An example of what we want/what is needed

Tumour Treating Fields (TTFields) therapy is an innovative, licensed treatment option for patients with newly diagnosed GBM receiving temozolomide. A recent meta-analysis has demonstrated that therapy with TTFields plus temozolomide can enhance survival rates compared with temozolomide alone in newly diagnosed patients (Ballo et al., 2023). However, TTFields therapy is currently unavailable to patients within the NHS and has not yet been appraised by NICE.

This situation contrasts with that of those living in countries like France, Austria, Germany, Sweden, Switzerland, Japan, Israel and the United States, where the treatment is accessible to eligible patients with GBM. We want NICE to appraise TTFields therapy and its clinical- and cost-effectiveness in England as quickly as possible and this assessment used to inform a decision on market access to potentially allow patients with such a devastating disease access to this licensed therapy.

You can read more about Tumour Treating Fields on the brainstrust website here

What we are doing together

So far we have written to NICE, with the support of the British Neuro Oncology Society (BNOS), to request that TTF technology is appraised appropriately using the right process and with up to date information. This approach has been well received and we are expecting to have an update in the coming weeks. Hopefully TTF technology will be more accessible to more people with Glioblastoma soon.

Working together makes a difference

Our mission is to ensure all patients with a brain tumour – including those with highly aggressive GBM – receive fair access to the latest innovative treatments. Brain Tumour Research, Brain Tumour Support, brainstrust, the International Brain Tumour Alliance, OurBrainBank, and The Brain Tumour Charity form a group of brain tumour charities and a non-profit organisation that are working together to ensure that patients with GBM have timely access to innovative treatments.

 

Further help

If you would like to stay updated or offer your support, you can reach out to any of the brain tumour patient organisations in this group through the following

websites:

OurBrainBank: https://www.ourbrainbank.org/

Brain Tumour Support: https://www.braintumoursupport.co.uk/

Brain Tumour Research: https://www.braintumourresearch.org

brainstrust: https://brainstrust.org.uk/

The Brain Tumour Charity: https://www.thebraintumourcharity.org

International Brain Tumour Alliance: https://theibta.org/

How we are doing this work

This work has been facilitated by MAP Patient access, who have issues this transparency statement:

MAP Patient Access, a UK market access consulting firm, is providing pro-bono support to organise and facilitate collaboration between brain tumour charities and a not-for-profit organisation. This effort aims to call for the fair assessment of new treatment options for patients. Please note that Novocure is a client of MAP, and some of the patient organisations that are signatories to this group have received sponsorship or other support from Novocure (details are available on request).

 

References:

The Brain Tumour Charity (2020). Glioblastoma Prognosis | Brain Tumour Survival Rates. [online] Thebraintumourcharity.org. Available at:

https://www.thebraintumourcharity.org/brain-tumour-diagnosis-treatment/types-of-brain-tumour-adult/glioblastoma/glioblastoma-prognosis/

Cancer Research UK (2023) Glioblastomas. Available at https://www.cancerresearchuk.org/about-cancer/brain-tumours/types/glioblastoma (last accessed: 09 July 2024).

Bawden, A. (2024). UK has some of worst cancer survival rates in developed world, report says. The Guardian. [online] 11 Jan. Available at:

https://www.theguardian.com/society/2024/jan/11/uk-cancer-survival-rates-developed- world-report.

Ballo et al. (2023) J Neurooncol. 164(1):1-9. doi: 10.1007/s11060-023-04348-w.202

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php